Hi, I've had Hashimotos since aged 18 ....I'm now 52, and have been in relatively good health throughout...despite having menopause at 35, and other stuff which now I think back must have been connected to my Hashis.
The Dr decided last year that I needed to decrease my Levothyroxine to just 50mcg/day, and since then I have developed lots of weird symptoms....scalloped tongue, reflux, hoarse voice with annoying cough, painful joints in my elbows, knees and my heels (can't even touch one its so painful). Weight gain around my middle and now up to 9st 3lbs, when I've always been slim ... 8 - 8st 8lbs. Tingling arms and hands and really bad snoring (according to hubby!!)
My latest blood test now shows my TSH at 57.03. Is this really high?? I did ask for all relevant tests but the surgery only put TSH on blood form!!
The clinician in my Drs today has been very helpful. She's increasing my dose gradually and next week I'll go for further blood test - PTH2, TPOX3, TRAB and TSH.
When am I likely to feel the benefits of the increase and what are these tests? Any advice would be greatly appreciated. Feeling a little lost and my tiredness/brain fog doesn't help. ☹️
Written by
littlegem1
To view profiles and participate in discussions please or .
Previous Dr was ignorant or negligent to reduce your dose and not retest after 6-8 weeks
How much were you taking before dose was reduced to 50mcg? Absolute maximum dose should be reduced in one go is by 25mcg.
It takes at least 6 weeks for each dose increase to have full effect
Dose should be increased in 25mcg steps, retesting after 6-8 weeks each time.
Dose is increased slowly until TSH is around one and FT4 towards top of range and FT3 at least half way in range
As you have been under medicated, very likely you have low vitamin D, folate, ferritin and/or B12. Request that these are tested at 6 week retest of thyroid levels
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels can affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common, by far, is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first before trying this for 3-6 months minimum
Thank you for your advice along with the links. I agree the previous Dr wasn't that interested, especially when I was asking about trying NDT. He laughed and when I explained I was trying to take charge of my own health by doing the research he did apologise for pooh poohing my suggestion and then proceeded to show me the difference in price for each thyroid medication. Needless to say that's why I was kept on Levo as its as cheap as chips to the NHS!!
Getting vitamins very good with supplements, dose of Levothyroxine correct and for many, absolutely strictly gluten free diet, this is enough to improve conversion of FT4 to FT3.
Your dose was reduced too much. If you were well before reduction you should aim to increase dose back up to where it was, but you may have to do it gradually depending on how much / how long.
Avoid that doctor completely in future, though you may wish to make a complaint when you’re feeling stronger.
Thanks for your advice. I do keep my results each time. He decided that I was over medicated and over time it was reduced from 125 to 75 then 50.
I remember discussing results with a Dr who has since retired and my results were showing a high TSH so she said I need to reduce my dose...until I questioned shouldn't it be the other way? To which she replied "oh yes you're right!!"
Have lost faith in Drs regarding thyroid treatments!! That's why I follow ThyroidUk!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
TSH
TSH
Tsh
TSH
Tsh
